RARE Support

Tricia Dennis

FOR IMMEDIATE RELEASE: R.A.R.E. to host 2nd Annual Conference on Schizencephaly in Orlando, Florida Orlando, Florida – Established in 2011, We Are R.A.R.E., Inc. is a 501(c)(3) initiative made up of experts inSchizencephaly, including parents...

Certainly we love sharing stories, pictures and updates about our day to day and our children in therapy… all the things that we’re supposed to do and share when you’re on social media. Building connections. But the truth is is...

Andrew is an amazing young man with a mind that even more beautiful than his smile. It seems we’ve known Andrew since he was practically a baby when he and my son began swimming together with the dolphins. Andrew has bilateral Schizencephaly...

Congratulations to Amyah Nelson who had an amazing turn out and event at Buffalo Wild Wings in Eerie PA!! Amyah Nelson will be attending the 2017 convention and speaking about herself and life before the adult panel begins that Saturday. This benefit...

One if our beloved programs is returning this year After our ability to fund it through pledges, donations and sponsorships Thank you to all that helped and continue to fund this important program Congratulations Andrew!! Love We are RARE and our...

⦁ I was 18 when I found out I was pregnant. When I was 3months pregnant, I had passed out at work and hit my stomache on a metal table. when the ambulance got there, they said my sugar was 24 (way to low). They got me to the hospital and said the baby...

Join We Are RARE and be a part of Purple and Green night at the Orlando Amway arena April 11th Tickets are discounted through Our link and directly contacting Matan Cohen with the Orlando Magic. 100 tickets sold get our kids on the half court. For more...

Parents Terrie and Larry Randolph write Ethan Wayne Randolph born in Dayton, Ohio on Nov 3, 2008 with Schizencephaly. We initially were told of his condition during an ultrasound at 7.5 mos gestation. At that time we were told the best thing we could...

On saturday The Pub hosted our Bikini Car Wash charity event. The Kings Head British Pub would like to say a HUGE THANK YOU to the generosity of everyone who attended the event. To all the local businesses who supported the event. To all the volunteers...

Between the week of April 22nd and the 25th Nancy Grace will be doing a small piece towards the end of her show about Noahscart.org and the banner being raised and flown from St Augustine to Canada! We are really excited to have her showing support...

Ada is our Schiz warrior of the month for April. If you want to help in our efforts for her fundraiser order your shirt today at www.itsallaboutlife.org Proceeds help Ada’s medical expenses Ada’s story will be featured in a new book as well....

One of the biggest obstacles Schizencehaly children and adults face are seizures. Some children spend weeks to month in hospitals due to uncontrollable seizures. we would like your feedback on what medications are working for your children.tell us your...

Help Line for Families

We Are R.A.R.E. not only looks at providing help for the individuals with RARE disorders but their families who care for them too. We understand the stress and hardships involved to support our love ones. You are not alone! Please reach out to us at help.me@wearerare.org if you need someone to talk to for emotional support.

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HELP LINE FOR FAMILIES

We Are R.A.R.E. not only looks at providing help for the individuals with RARE disorders but their families who care for them too. We understand the stress and hardships involved to support our love ones. You are not alone! Please reach out to us at contact-us@wearerare.org if you need someone to talk to for emotional support.